Signs of Intracranial Hypertension, Hypermobility and Craniocervical Obstructions in patients with ME/CFS (Pre-print 2019/published 2020) Bragée et al

strategist said:
I think he means where the connective tissue is lax. At least that's the adjective I see used with connective tissue. He could also mean loose or soft.
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He was using the same word one would use to describe for example the state of the soil in a flower pot or a flower bed. It's the opposite of packed/dense/compact/hard/heavy, so it can mean lightweight, that it's aerated/has a lot of air in it, that it's "fluffy" and porous. So yes, you could say loose or soft :)

ETA: Yes, lax too! Thank you :) I found this in the dictionary:
having an open or loose texture

a lax soil
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New press release from Bragée and Life Science yesterday:

Ny forskning på ’’kroniskt trötthetssyndrom’’ kan leda till nya behandlingsalternativ
https://www.mynewsdesk.com/se/sds-l...n-leda-till-nya-behandlingsalternativ-3123510
Auto-translate said:
New research on 'chronic fatigue syndrome' may lead to new treatment options

A study on the severe disease ME/CFS has found links to previously unknown background factors such as hypermobility, neck injuries and increased pressure in the cerebrospinal fluid and brain. The study, published in Frontiers in Neurology, was carried out by a team of researchers from Bragee Clinics and Karolinska Institutet, together with statisticians from SDS Life Science. [...]

- ''Some of our findings have been reported before, but not in such a large and clinically well-defined group. Although there is logic in the simultaneous findings of neck injuries, connective tissue disease and ME, no one has done such a compilation before'', says Björn Bragée, pain physician and founder of the ME-center. [...]

- "It is rare to see such clear statistically significant differences in a scientific study as in the comparison between patients with ME/CFS and a normal population," says Robert Szulkin, statistician at SDS Life Science. [...]

- ''If this is true, one could imagine both physiotherapeutic and drug treatments targeting the cause, and in some cases even surgery, which is a challenging idea where more research is needed'', concludes Björn Bragée.
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A news article based on the press release:

Ny forskning på ME kan ge nya behandlingsalternativ
https://www.dagensps.se/bors-finans...kning-pa-me-kan-ge-nya-behandlingsalternativ/

ETA: To clarify, there is no new study as far as I can tell. No new info either. The link in the press release goes to the study discussed in this thread.
 
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Tilly said:
I wonder if they ever did anymore with this study? Frontiers | Signs of Intracranial Hypertension, Hypermobility, and Craniocervical Obstructions in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | Neurology (frontiersin.org)
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I don't know. I don't think so?

Their head of research Bertilson was interviewed on TV a few weeks ago, but he didn't mention anything new or planned.

They haven't published any related research news or updates on the clinic's social media, and there has been no talk about it among their patients in the Swedish ME groups on social media either.

I haven't checked if the Ethical Review Authority has received any new applications recently.
 
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mango said:
I don't know. I don't think so?

Their head of research Bertilson was interviewed on TV a few weeks ago, but he didn't mention anything new or planned.

They haven't published any related research news or updates on the clinic's social media, and there has been no talk about it among their patients in the Swedish ME groups on social media either.

I haven't checked if the Ethical Review Authority has received any new applications recently.
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This is the concern I have. Each one of the researchers that look at this is then either warned off or taken down.

However there is mounting evidence of a big issue
The Relationship between Autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders - PMC (nih.gov)

Is Hypermobility Linked To Autism? - Ehlers Danlos Awareness

Autism_EDS_Connection (autismlevelup.com)

why is autism important well many of the young people with ME get that diagnosis too. Mostly when speaking to the parent they notice a change when in PEM state. This is a huge problem because if the Young Person presents in a PEM state gets told they are autistic but when rested and out of PEM state they are told they are not. This then puts the parent under pressure of Fabricating or Inducing Illness. This needs to be explored fully.

Then there is Sutterella bacteria linked to autism with digestive symptoms (ei-resource.org)

You have to wonder what all these bacteria or viral infections do to our connective tissue and why so much research has been stopped in this direction. Anecdotes are the start of any direction when considering research and of finding facts they tell us so much and yet are pushed aside. We need to keep asking the questions of why so many people with flexible joints and why do they change. Then look at which joints are affected and then look the symptoms/body signs soft skin flexible skin or stretch marks etc (with the stretch marks Lymes is known causes these so there is something to look at) and then at those that don't. The question then, what is the difference if any and what are the similarities if any.

POTS, autoimmune and EDS go hand in hand so we need to look.
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The latter part of this post shown in grey in the quote box has been copied to a more relevant thread here
 
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Tilly said:
This is the concern I have. Each one of the researchers that look at this is then either warned off or taken down.
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Can you please explain what you mean, expand on this? Are you implying that the Bragée research has been silenced by someone, and if so by whom? How?

As far as I know, nobody has tried to "warn off" or "take down" the Bragée clinic's research.

The Bragées are actually known to be the kind of people who seem to really thrive on being seen as groundbreaking and unconventional, pioneers. My impression is that they love a bit of controversy, and they know how to take advantage of it too. Historically they seem to have intentionally created this image of themselves as being the ones who go against the grain, or "against the stream" as we say here in Sweden. So the idea of someone succeeding in "warning them off" seems highly unlikely to me -- I'd say any such attempts would only add fuel to their fire.

Have they received lots of straight shooting and uncomfortable questions about the problematic aspects of some of their other earlier research (patient safety issues, bad methodology and BPS in particular), from out-spoken patients/activists over the years? Absolutely. Have they received some pretty forthright but justifiable criticism of their approach (heavy on the experimental stuff, sorely lacking in patient safety) from independent patients/activists since before they even opened their ME center? For sure. Did they ever care? Did it even make them pause and reflect? Nope. Water off a duck's back.

What has been silenced over the years are the patient safety issues, the serious risks of harm and the patients' concerns.

However, that was all about their previous research such as "ACT" (CBT/GET), experimental methods to provoke PEM during medical investigations, and previously planned projects such as experimental brain surgery back in 2017 etc.

There hasn't been much to comment on regarding their craniocervical research yet, though. My impression is that we all are still simply waiting to hear more about their plans and hypotheses.

In the TV interview (linked above) Bragée's head of research Bertilson said that they have "the largest cohort of patients in the world", and that they are currently "collecting knowledge". Doesn't sound to me like someone who has been "taken down".

(Edited to correct some spelling mistakes, sorry.)
 
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mango said:
Their head of research Bertilson was interviewed on TV a few weeks ago
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There's one more thing I'd like to add. When Bertilson was asked about how many people there are with ME [in Sweden], he replied:

"What we can say based on research is that there are at least as many as there are people with rheumatoid arthritis, which is between 50,000 and 100,000 but it's probably, likely I would say, much more."

That's a very high estimate. Sweden's population is currently approx 10.4 million. I believe the prevalence number most often cited is 0,1-0,6%? SBU said 0,1% (based on the CCC) in their most recent report, which means approx 10 000 pwME in Sweden. RME, the Swedish patient organisation, used to say 10 000 - 40 000, but changed it to 10 000 a few years ago.

I can't help wondering, when the Bragée team says "ME", do they mean the same thing as we here on the forum do when we say "ME"?

When Bertilson claims that Bragée ME-center has the largest cohort of "this kind of patients" in the world, is he talking about ME diagnosed according to the CCC, or something else?

(Original quote in Swedish: "Vad vi kan säga från forskning är att åtminstone finns det minst lika många som det finns antalet personer med reumatoid artrit, vilket är mellan 50 000 och 100 000 men det är förmodligen, sannolikt skulle jag vilja säga, mycket fler.")
 
 
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